In a fit of morbidity earlier this week, I was thinking about how SOL I'll be when Mom and Dad aren't around. I don't expect anything soon , but eventually.
It's OK, I thought, I'll tell Mom my worries and she'll tell me she'll be around a while or something else to make it fine.
EXCEPT that's not what she said.
I know, she said, I've been thinking about that, too. You'll figure it out; maybe you'll hire somebody.
WTF?
Showing posts with label mom. Show all posts
Showing posts with label mom. Show all posts
Thursday, August 29, 2013
Thursday, April 4, 2013
So sad
Claren is 11 years old. I think she qualifies as geriatric on the poster about age at the vet.
She not ready to retire, I don't think -- her job is pretty cushy -- but I do think about it and about getting a new dog.
A few weeks ago, I was thinking about it and a really sad and morbid thought popped into my head.
It scared me so much I had to tell Mom. I told her when we were walking Claren on the bike trail. She listened closely, stopped walking AND ... laughed. Totally cracked up and mocked me and said she couldn't wait to tell the friends she was seeing that night.
My thought: My successor dog might outlive Mom and Dad.ser
She not ready to retire, I don't think -- her job is pretty cushy -- but I do think about it and about getting a new dog.
A few weeks ago, I was thinking about it and a really sad and morbid thought popped into my head.
It scared me so much I had to tell Mom. I told her when we were walking Claren on the bike trail. She listened closely, stopped walking AND ... laughed. Totally cracked up and mocked me and said she couldn't wait to tell the friends she was seeing that night.
My thought: My successor dog might outlive Mom and Dad.ser
Saturday, March 9, 2013
Flush with victory
My nephew peed in my bathroom last night.
I don't think he really had to go or anything. Rather he wanted to give the "Acme flusher prototype" an authentic test.
I have been the same was since Mom built the AFP on Friday. It is based on my idea, but she didn't like the clamp idea (which I am still sure is a winner), so she used a rubber band to fasten it. She also substituted rope for fishing line.
My brother-in-law was impressing, saying he thought she had "a bit of engineer in her."
I love it and have probably flushed my toilet more in the past day than in the past year.
UPDATE
We are on AFP 2.0 now, and my nephew gave it an authentic test this afternoon.
The rubber-band popped off. We are now using one of the clamps. Seems to work awesomely!
I don't think he really had to go or anything. Rather he wanted to give the "Acme flusher prototype" an authentic test.
My brother-in-law was impressing, saying he thought she had "a bit of engineer in her."
I love it and have probably flushed my toilet more in the past day than in the past year.
UPDATE
We are on AFP 2.0 now, and my nephew gave it an authentic test this afternoon.
The rubber-band popped off. We are now using one of the clamps. Seems to work awesomely!
Monday, December 24, 2012
Ugh
I told Mom Thursday night that it is no fun coming home to a quiet house as I have been doing because my sister and family went to Maine for Christmas.
The next day I set about proving how dangerous it is, too. (Why is everything getting dangerous? )
Every day I have been alone I have had to call Mom for help.
The first day I fell shutting the door. I learned that bathroom tile is harder than slate because I smacked my forehead on the mudroom floor, but it wasn't as bad as when I fell in the shower. Technically it is my fault because I did not fasten my seat belt, thinking I'd be in my chair just briefly.
The next day I called her from the bathroom floor. I had showered and dried off and all. As I transferred to my chair, my knee nicked a piece of the chair and spasmed. Down I went. I called Mom and said, I am fine but might be on the floor when you come up. She just put my slippers on and then I was able to stand OK.
Last night was the worst. I was about to get on my chaise, so I wanted to empty my bladder first. I got to the bathroom in time, but slipped and wound up crouched in front of the toilet. I tried to get back up but succeeded only in trapping my leg between the transfer pole and the wall. Oh, and my bladder decided to empty itself while I was on the floor.
The real trouble was my phone was on the table by my chaise. I did not want to get into my chair since I was unclean. So I backed my chair up, then laid out on the floor and pulled myself using the chair toward the phone. I also pushed with my legs. I finally got to my table and could not reach the phone, so I pulled the table over until the phone slid off. Then I called Mom and suggested she bring Dad because there was a lot to do.
I am pretty sure that left to my own devices, I could have recovered from all of these falls. I had shoes on or nearby. I was near poles or something I could use to stand. But ...
I am guessing I won't fall tonight, in part because Dad is over here watching TV. Not sure if he or Mom thought that up. Can't really blame them.
The next day I set about proving how dangerous it is, too. (Why is everything getting dangerous? )
Every day I have been alone I have had to call Mom for help.
The first day I fell shutting the door. I learned that bathroom tile is harder than slate because I smacked my forehead on the mudroom floor, but it wasn't as bad as when I fell in the shower. Technically it is my fault because I did not fasten my seat belt, thinking I'd be in my chair just briefly.
The next day I called her from the bathroom floor. I had showered and dried off and all. As I transferred to my chair, my knee nicked a piece of the chair and spasmed. Down I went. I called Mom and said, I am fine but might be on the floor when you come up. She just put my slippers on and then I was able to stand OK.
Last night was the worst. I was about to get on my chaise, so I wanted to empty my bladder first. I got to the bathroom in time, but slipped and wound up crouched in front of the toilet. I tried to get back up but succeeded only in trapping my leg between the transfer pole and the wall. Oh, and my bladder decided to empty itself while I was on the floor.
The real trouble was my phone was on the table by my chaise. I did not want to get into my chair since I was unclean. So I backed my chair up, then laid out on the floor and pulled myself using the chair toward the phone. I also pushed with my legs. I finally got to my table and could not reach the phone, so I pulled the table over until the phone slid off. Then I called Mom and suggested she bring Dad because there was a lot to do.
I am pretty sure that left to my own devices, I could have recovered from all of these falls. I had shoes on or nearby. I was near poles or something I could use to stand. But ...
I am guessing I won't fall tonight, in part because Dad is over here watching TV. Not sure if he or Mom thought that up. Can't really blame them.
Thursday, November 3, 2011
Uh-oh, fire drill
We had a fire alarm at work today. Total false alarm, but I am not sure I am real down with the evacuation plans for those of us in wheelchairs.
The safety coordinator and the two of us in chairs go into an office that has a balcony -- although it has a step -- and we wait basically. The coordinator calls and makes sure the fire department knows about us so they can rescue us, but that's it.
At my old job, I waited in the stairwell, which friends did not think was good enough. But I was OK with it because the fire chief told me the stairwell was very fire-safe and had all sorts of anti-fire things built into them.
The office we were in did not seem particularly fire-safe. It just had a balcony.
I know an office fire is super-unlikely, and I have told the other person who uses a chair not to worry about it. But today was a little unsettling.
In other news, I have added my right pinky to bones I potentially have broken. It has been aching for a month or more, not real badly but bad enough.
I also need to add Mom's ankle.
We were on our walk and I saw a dead squirrel. I freaked out because I was worried about Claren biting it. And I jerked my chair away and right into Mom. She claimed to be OK, but ... Stupid Friedreich's ataxia.
The safety coordinator and the two of us in chairs go into an office that has a balcony -- although it has a step -- and we wait basically. The coordinator calls and makes sure the fire department knows about us so they can rescue us, but that's it.
At my old job, I waited in the stairwell, which friends did not think was good enough. But I was OK with it because the fire chief told me the stairwell was very fire-safe and had all sorts of anti-fire things built into them.
The office we were in did not seem particularly fire-safe. It just had a balcony.
I know an office fire is super-unlikely, and I have told the other person who uses a chair not to worry about it. But today was a little unsettling.
In other news, I have added my right pinky to bones I potentially have broken. It has been aching for a month or more, not real badly but bad enough.
I also need to add Mom's ankle.
We were on our walk and I saw a dead squirrel. I freaked out because I was worried about Claren biting it. And I jerked my chair away and right into Mom. She claimed to be OK, but ... Stupid Friedreich's ataxia.
Thursday, September 15, 2011
Footplate of doom
The trick when you hurt yourself is to withstand the initial shock and urge to throw up.
The pain doesn't weaken, but I have found that if I can survive the initial jolt, I get a moment of clarity when I can figure out just how the heck to extricate myself.
Like the other night.
I ran over my foot, which should not really be possible but happens all too often to me because I stupidly don't use my footplate all the time. When I am going a short distance and transferring at the beginning and end of the journey, I often bypass the footplate. This is dumb. I know this.
Without my footplate, my feet easily get trapped under the front of the chair.
Like the other night.
Mom was running Claren out and I was on my way to the bathroom. My right foot got in the way of my chair and of course, the chair didn't care. It surged onto it, and only then did I manage to stop my chair.
The problem was my foot was stuck, pinned under the footplate, and I found myself leaning forward to take some of the pressure off.
There I was, foot underneath my chair, bent over at the waist so I was unable to back my chair off my foot -- Oh yeah, and in FREAKING PAIN!
But after the initial hurt, I realized what I needed to do. I could not sit up nor could I reach the wheelchair joystick. I needed that third arm or I needed Mom. "Help," I cried. She came and I was able to ask her to back the chair up. The foot's OK. And I am using my footplate a little more.
The pain doesn't weaken, but I have found that if I can survive the initial jolt, I get a moment of clarity when I can figure out just how the heck to extricate myself.
Like the other night.
I ran over my foot, which should not really be possible but happens all too often to me because I stupidly don't use my footplate all the time. When I am going a short distance and transferring at the beginning and end of the journey, I often bypass the footplate. This is dumb. I know this.
Without my footplate, my feet easily get trapped under the front of the chair.
Like the other night.
Mom was running Claren out and I was on my way to the bathroom. My right foot got in the way of my chair and of course, the chair didn't care. It surged onto it, and only then did I manage to stop my chair.
The problem was my foot was stuck, pinned under the footplate, and I found myself leaning forward to take some of the pressure off.
There I was, foot underneath my chair, bent over at the waist so I was unable to back my chair off my foot -- Oh yeah, and in FREAKING PAIN!
But after the initial hurt, I realized what I needed to do. I could not sit up nor could I reach the wheelchair joystick. I needed that third arm or I needed Mom. "Help," I cried. She came and I was able to ask her to back the chair up. The foot's OK. And I am using my footplate a little more.
Sunday, May 8, 2011
Yeah, Mom
Last Mother's Day, I talked about how I inspire maternal instincts in women who aren't my mother.
Last night, though, I fell apart and needed the real thing. As she always is, Mom was there.
I am battling recently some really rotten feelings. Not sure why, but depression is bearing down hard lately. I think I do a good job hiding it at work and putting on a friendly face, but it is exhausting.
Distress with God often pops up during these dark days and darker nights, and my youngest niece had her First Communion earlier yesterday. One of her gifts was a guardian angel pin with the saying that God will not let the righteous fall.
I said to Mom last night: "But he does let the righteous fall and pee all over the bathroom floor" as I had done earlier. I realize that declaring myself as righteous may make me self-righteous, but that was not a big concern at that moment.
Mom assured me God does protect the righteous, but I stuck to my guns as my tears started to run: "He talks a good game, but he really doesn't." And then I really lost it: crying and heaving.
She just hugged me, and that helped me recover. It didn't remove my doubt or solve my problems, but it's hard to despair when you feel how much your mother loves you. Plus, my allergies are so bad that the crying and sobbing made it so I could not breathe, so I had to settle down anyway.
But it was mostly the hug.
Last night, though, I fell apart and needed the real thing. As she always is, Mom was there.
I am battling recently some really rotten feelings. Not sure why, but depression is bearing down hard lately. I think I do a good job hiding it at work and putting on a friendly face, but it is exhausting.
Distress with God often pops up during these dark days and darker nights, and my youngest niece had her First Communion earlier yesterday. One of her gifts was a guardian angel pin with the saying that God will not let the righteous fall.
I said to Mom last night: "But he does let the righteous fall and pee all over the bathroom floor" as I had done earlier. I realize that declaring myself as righteous may make me self-righteous, but that was not a big concern at that moment.
Mom assured me God does protect the righteous, but I stuck to my guns as my tears started to run: "He talks a good game, but he really doesn't." And then I really lost it: crying and heaving.
She just hugged me, and that helped me recover. It didn't remove my doubt or solve my problems, but it's hard to despair when you feel how much your mother loves you. Plus, my allergies are so bad that the crying and sobbing made it so I could not breathe, so I had to settle down anyway.
But it was mostly the hug.
Wednesday, April 20, 2011
No, I don't think Hitler was misunderstood
When the Enron boys were being arrested after they ran the company into the ground, I expressed some sympathy for whichever one of the bad guys was being perp-walked on TV at the time. This prompted one of my co-workers to say that if they ever committed a crime, they wanted me on the jury.
When Bernie Madoff was on trial, my sympathetic streak (all right, it is more like a 10-lane highway) popped up again. I told a friend how bad I felt because he just looked like someone's grandfather.
I do not in any way think these people should not have been punished. They ruined countless lives. I just felt bad for them, especially if they seem contrite.
Now I know I am my mother's son, and she feels sympathy for anyone. But my disability has certainly strengthened the sympathetic bones in my body.
Friedreich's ataxia has forced me to consider people's situations -- like why so-and-so didn't hold the door for me or whatever. That was mean, but ... There is almost always a but. Maybe they had a headache or something on their mind.
And while I usually hope and pray I would not make the same choices, maybe I appreciate their tough choices more.
Why bring this up? Because on this Spy Wednesday, I realized that I am growing more and more sympathetic to Judas, Jesus' betrayer.
I do not hold with betraying a friend to authorities who want to kill him or betraying of friends of any kind. But ...
Jesus confounds me now. Imagine being there and living with him. He makes loaves and fish feed thousands, but he doesn't heal everyone. He preaches "turn the other cheek," then goes ballistic on the money-changers in the temple. After some gal spends community money for perfume to anoint him, he defends it by saying the poor will always be around.
And I am always sympathetic to someone who kills himself. That is a choice I really hope I never make but one I think I do understand. I think I know what it is like to despair, to feel helpless and hopeless, to think not having to get up the next day would be a blessing. But ...
There's that "but" again. I know those feelings, but I don't give in to them. Actually, that is the worst and saddest thing about Judas: that he did.
When Bernie Madoff was on trial, my sympathetic streak (all right, it is more like a 10-lane highway) popped up again. I told a friend how bad I felt because he just looked like someone's grandfather.
I do not in any way think these people should not have been punished. They ruined countless lives. I just felt bad for them, especially if they seem contrite.
Now I know I am my mother's son, and she feels sympathy for anyone. But my disability has certainly strengthened the sympathetic bones in my body.
Friedreich's ataxia has forced me to consider people's situations -- like why so-and-so didn't hold the door for me or whatever. That was mean, but ... There is almost always a but. Maybe they had a headache or something on their mind.
And while I usually hope and pray I would not make the same choices, maybe I appreciate their tough choices more.
Why bring this up? Because on this Spy Wednesday, I realized that I am growing more and more sympathetic to Judas, Jesus' betrayer.
I do not hold with betraying a friend to authorities who want to kill him or betraying of friends of any kind. But ...
Jesus confounds me now. Imagine being there and living with him. He makes loaves and fish feed thousands, but he doesn't heal everyone. He preaches "turn the other cheek," then goes ballistic on the money-changers in the temple. After some gal spends community money for perfume to anoint him, he defends it by saying the poor will always be around.
And I am always sympathetic to someone who kills himself. That is a choice I really hope I never make but one I think I do understand. I think I know what it is like to despair, to feel helpless and hopeless, to think not having to get up the next day would be a blessing. But ...
There's that "but" again. I know those feelings, but I don't give in to them. Actually, that is the worst and saddest thing about Judas: that he did.
Sunday, April 3, 2011
Convenient?
A few weeks ago Mom and I were discussing where to keep my growing stash of vitamins and food supplements. We originally decided to keep them on the shelf in the kitchen with all the other medicines.
That's not very convenient for me, I told Mom. Her reply: Nowhere is convenient for you. She wasn't being mean, just honest. I love this house, but it was not meant to house someone in a wheelchair.
The new house will be more convenient, with a private bathroom, so I can use the bathroom even if a big family gathering is taking place in the family room.
I just think that Mom, who was just talking about this house, is actually correct about life with Friedreich's ataxia and that nowhere will ever be convenient.
The pills just sit on the dining room table right in front of me each night.
That's not very convenient for me, I told Mom. Her reply: Nowhere is convenient for you. She wasn't being mean, just honest. I love this house, but it was not meant to house someone in a wheelchair.
The new house will be more convenient, with a private bathroom, so I can use the bathroom even if a big family gathering is taking place in the family room.
I just think that Mom, who was just talking about this house, is actually correct about life with Friedreich's ataxia and that nowhere will ever be convenient.
The pills just sit on the dining room table right in front of me each night.
Monday, March 21, 2011
Finished the Test that Dare Not Speak Its Name
I can't write too much about it because if I gross my little sister out, she said she would retaliate by talking non-stop about breast pumps and girly stuff. So I will be brief.
FedEx came and picked up the well-wrapped and bagged stool from the three-day stool collection test. Mom did the heroic work of packing things up properly. I just pooped, which has been much easier since I visited the nutritionist.
I can't thank Mom enough. I don't even want to think about trying to do all the prep work.
FedEx came and picked up the well-wrapped and bagged stool from the three-day stool collection test. Mom did the heroic work of packing things up properly. I just pooped, which has been much easier since I visited the nutritionist.
I can't thank Mom enough. I don't even want to think about trying to do all the prep work.
Tuesday, October 5, 2010
I think I broke my ear
Last night was bad.
I got up to go to the bathroom fine, and it went downhill from there fast.
I won't bore or disgust you with details, suffice it to say my bladder was being a fucking pisser and I had to change pants.
I decided to call Mom for a little help and then something happened.
I don't know if I reached for my cellphone and lost my balance or if I coughed or just breathed funny, but I fell. I had not done my seat belt because I needed to changed my pants and hadn't pulled them up. I smacked my left ear into the 4-inch wide wall at the front of the shower. Then I sort of slid down the wall, smashing my cheek and glasses. Then I fell completely onto the floor of the shower.
Lying in the fetal position, half in the shower, with my damp pants around my ankles, I was pretty sure I never wanted to get up.
Then I decided I didn't want Mom or Dad to find me like this, and I was certain that I had made enough noise falling to wake the dead.
So I pulled myself up, brushing a hand over my face and head to make sure I was blood-free, then I called Mom for help. She must have know I was hurting because I kind of muttered I needed help, and she said she'd come right downstairs even though she couldn't have really heard me.
We got things taken care of and as she was letting the bathroom door close on me so I could wash my hands, I said: "Sorry, Mom." She replied: "It's all right, Matt."
I almost fell out of my chair again I started sobbing so hard. Instead I just collapsed with my chest on my thighs and Mom rubbing my head.
It is anything but all right that my mother who just went to her 50th college reunion has to tend to her son like that.
It is anything but all right that my little sister will have to tend to her older brother when this happens in the new house. (I wanted to say "if it happens in the new house," but I am not an idiot.)
It is anything but all right that Dad has to chauffeur me around.
Where was God for all this? What kind of being turns such a cold ear and eye on me? God should not rely on people to be there for me.
At least my people are unlikely to let me down.
I got up to go to the bathroom fine, and it went downhill from there fast.
I won't bore or disgust you with details, suffice it to say my bladder was being a fucking pisser and I had to change pants.
I decided to call Mom for a little help and then something happened.
I don't know if I reached for my cellphone and lost my balance or if I coughed or just breathed funny, but I fell. I had not done my seat belt because I needed to changed my pants and hadn't pulled them up. I smacked my left ear into the 4-inch wide wall at the front of the shower. Then I sort of slid down the wall, smashing my cheek and glasses. Then I fell completely onto the floor of the shower.
Lying in the fetal position, half in the shower, with my damp pants around my ankles, I was pretty sure I never wanted to get up.
Then I decided I didn't want Mom or Dad to find me like this, and I was certain that I had made enough noise falling to wake the dead.
So I pulled myself up, brushing a hand over my face and head to make sure I was blood-free, then I called Mom for help. She must have know I was hurting because I kind of muttered I needed help, and she said she'd come right downstairs even though she couldn't have really heard me.
We got things taken care of and as she was letting the bathroom door close on me so I could wash my hands, I said: "Sorry, Mom." She replied: "It's all right, Matt."
I almost fell out of my chair again I started sobbing so hard. Instead I just collapsed with my chest on my thighs and Mom rubbing my head.
It is anything but all right that my mother who just went to her 50th college reunion has to tend to her son like that.
It is anything but all right that my little sister will have to tend to her older brother when this happens in the new house. (I wanted to say "if it happens in the new house," but I am not an idiot.)
It is anything but all right that Dad has to chauffeur me around.
Where was God for all this? What kind of being turns such a cold ear and eye on me? God should not rely on people to be there for me.
At least my people are unlikely to let me down.
Sunday, October 3, 2010
I fell into a razor
Rather than pay someone $15 to drag a razor over my head for a few minutes, I bought an electric razor. Actually, Mom bought it for me for Saint Matthew's feast day a few years ago.
I suppose I could cut my own hair, but Mom doesn't charge, so it works out great. I have saved lots of money and never thought I'd regret it ... until today.
My liberal mom, I suspect, is still reeling from last night at her 50th college reunion when a friend she had not seen in years asked her if she was a member of the Tea Party. Granted, Mom was pretty conservative when younger.
She must have still been thinking about it. That's the only way to explain what happened this morning when she cut my hair.
I felt the metal of the razor right away, and I started to ask if Mom had forgotten something, like the Number 2 blade cover. She immediately stopped, and her face told me that she did. The cool breeze I felt down the middle of my scalp was another clue.
After showing me the start of my reverse mohawk in a mirror, Mom went next door to get my sister. She has a razor with a Number 1 blade (we lost our No. 1) and we thought she might have some ideas.
She came over with her razor and her family. My 5-year-old nephew ran in, started laughing at me and started referring to it as a "tomahawk." My niece, 7, apparently brought a camera over to capture the scene. Then my brother-in-law. I forget what he said and it wasn't his words. He has some looks, though, that said it all.
My sister cut it with the Number 1 all over, and oh my god it is short. I wish I could blame this on Friedreich's ataxia, but I can't ... unless ...
I fell into a razor.
I suppose I could cut my own hair, but Mom doesn't charge, so it works out great. I have saved lots of money and never thought I'd regret it ... until today.
My liberal mom, I suspect, is still reeling from last night at her 50th college reunion when a friend she had not seen in years asked her if she was a member of the Tea Party. Granted, Mom was pretty conservative when younger.
She must have still been thinking about it. That's the only way to explain what happened this morning when she cut my hair.
I felt the metal of the razor right away, and I started to ask if Mom had forgotten something, like the Number 2 blade cover. She immediately stopped, and her face told me that she did. The cool breeze I felt down the middle of my scalp was another clue.After showing me the start of my reverse mohawk in a mirror, Mom went next door to get my sister. She has a razor with a Number 1 blade (we lost our No. 1) and we thought she might have some ideas.
She came over with her razor and her family. My 5-year-old nephew ran in, started laughing at me and started referring to it as a "tomahawk." My niece, 7, apparently brought a camera over to capture the scene. Then my brother-in-law. I forget what he said and it wasn't his words. He has some looks, though, that said it all.
My sister cut it with the Number 1 all over, and oh my god it is short. I wish I could blame this on Friedreich's ataxia, but I can't ... unless ...
I fell into a razor.
Tuesday, September 7, 2010
Job or exercise
I figured out how to exercise every day: I just need to quit my job.
I read about other people with Friedreich's ataxia, and they talk about how much they exercise and go off on "use it or lose it" ideas. I am not sure they work full time.
I rode my handcycle for maybe two miles today on the bike trail. It felt really good, especially on the fourth trail when I looked at my odometer and it said 13 mph.
Granted, my odometer is generous to me. It tells me I have gone a mile when I know it is only about two/thirds of a mile. So 13 mph might be more like 10, but it still felt cool -- wind in my face, pavement rolling beneath me. Heck, I was hardly pedaling.
Then, I realized: If I can go 13 without pedaling going out, pedaling back is going to suck.
It did.
I was pretty exhausted by the time I got to my pit team of Mom and Claren who were sitting in the shade at the end of the third trail.
One of the things I don't like about the handcycle is that it is hard to have Claren run along side me. My hands are pedaling so I can't hold the leash, and the trike is higher than my recumbent was and it is not real easy to pick up after Claren.
That is the main reason Mom comes. She walks Claren and I ride past her and then return to her. But it is also nice to have someone to stop and chat with while I catch my breath. Or someone to give me a subtle push when needed.
After I got back, I basically napped the rest of the day.
This is where quitting my job comes in.
I read about other people with Friedreich's ataxia, and they talk about how much they exercise and go off on "use it or lose it" ideas. I am not sure they work full time.
I rode my handcycle for maybe two miles today on the bike trail. It felt really good, especially on the fourth trail when I looked at my odometer and it said 13 mph.
Granted, my odometer is generous to me. It tells me I have gone a mile when I know it is only about two/thirds of a mile. So 13 mph might be more like 10, but it still felt cool -- wind in my face, pavement rolling beneath me. Heck, I was hardly pedaling.
Then, I realized: If I can go 13 without pedaling going out, pedaling back is going to suck.
It did.
I was pretty exhausted by the time I got to my pit team of Mom and Claren who were sitting in the shade at the end of the third trail.
One of the things I don't like about the handcycle is that it is hard to have Claren run along side me. My hands are pedaling so I can't hold the leash, and the trike is higher than my recumbent was and it is not real easy to pick up after Claren.
That is the main reason Mom comes. She walks Claren and I ride past her and then return to her. But it is also nice to have someone to stop and chat with while I catch my breath. Or someone to give me a subtle push when needed.
After I got back, I basically napped the rest of the day.
This is where quitting my job comes in.
Tuesday, August 17, 2010
Where was my stuffed animal barrier?
Mom threw away most of our stuffed animals when I was away at college; the only stuffed animal I have now is Blue 2 from my nephew.
I am not blaming Mom's stuffed-animal purge for my fall out of bed this morning. But my youngest niece does surround herself with stuffed animals to keep her in bed. I did not have Pooky or Barf Bear or anyone to pile up on my bedside. Again, not blaming, just saying.
Without the stuffed animals, I rolled or stretched in my sleep and woke up with a SPLAT on the floor. Of course, it wasn't that simple because it's never that simple.
One foot had slammed on to the turning release for the cast iron radiator nearby. The radiator wasn't on, but it hurt pretty bad.
My head was above the Super Pole. The rest of my body was below the Super Pole. My neck was between the Super Pole and the bed.
It was about 7 a.m. so I knew Dad was up and I called for him. But my mouth was so dry, I was hardly audible. He did hear something because he came into the room a little later and said "hello?" I didn't say anything, figuring my situation spoke for itself. But I think he must have thought I was dead, because he quickly asked if I was all right.
I was, but my foot was keeping me from escaping. He helped me move that, then tried to get my head out. I wasn't so worried about that as I knew it wasn't stuck, but just needed me to move a little.
Dad left to go get help and, I took the opportunity to wiggle toward the foot of the bed to free my head. I got it free just as Dad returned with Mom. They then helped me into my chair.
In the driveway before I left for work, I was telling my sister, and I said something like, I could have done it without help if I had to. It was true. If I knew no help was available, I'd have sucked it up and scraped my foot off the radiator. I got my head free. I could have gotten up by myself. It would have taken longer, hurt more and just plain sucked. But I could have done it.
Pretty sure Mom and my sister don't believe that, but maybe if Mom had not thrown away all the stuffed animals, it would not be an issue.
I am not blaming Mom's stuffed-animal purge for my fall out of bed this morning. But my youngest niece does surround herself with stuffed animals to keep her in bed. I did not have Pooky or Barf Bear or anyone to pile up on my bedside. Again, not blaming, just saying.
Without the stuffed animals, I rolled or stretched in my sleep and woke up with a SPLAT on the floor. Of course, it wasn't that simple because it's never that simple.
One foot had slammed on to the turning release for the cast iron radiator nearby. The radiator wasn't on, but it hurt pretty bad.
My head was above the Super Pole. The rest of my body was below the Super Pole. My neck was between the Super Pole and the bed.
It was about 7 a.m. so I knew Dad was up and I called for him. But my mouth was so dry, I was hardly audible. He did hear something because he came into the room a little later and said "hello?" I didn't say anything, figuring my situation spoke for itself. But I think he must have thought I was dead, because he quickly asked if I was all right.
I was, but my foot was keeping me from escaping. He helped me move that, then tried to get my head out. I wasn't so worried about that as I knew it wasn't stuck, but just needed me to move a little.
Dad left to go get help and, I took the opportunity to wiggle toward the foot of the bed to free my head. I got it free just as Dad returned with Mom. They then helped me into my chair.
In the driveway before I left for work, I was telling my sister, and I said something like, I could have done it without help if I had to. It was true. If I knew no help was available, I'd have sucked it up and scraped my foot off the radiator. I got my head free. I could have gotten up by myself. It would have taken longer, hurt more and just plain sucked. But I could have done it.
Pretty sure Mom and my sister don't believe that, but maybe if Mom had not thrown away all the stuffed animals, it would not be an issue.
Sunday, July 11, 2010
Learning to breathe
Turns out that I have been breathing wrong for 38 years, 11 months and 11 days.
All right, not quite. I am just breathing wrong if I want to swim.
Mom is off the hook for this one as I guess I can blame evolution for making breathe like a land animal.
I am not quite sure how to breathe yet, but as my swimming teacher bluntly put it: Yeah, it is something you learn or you take in a lot of water.
I had just admitted to the teacher that while I was being pulled a length of the pool in five-second bursts on my stomach, there was a lot of water in my nose.
It was an interesting experience. I held someone's forearms. When I was ready, I took a breath and put my face in the water. She walked backward for five seconds. I let her pull me off my legs and when they were horizontal in the water, I tried to kick.
I survived. I did take in a lot of water. It sort of rested in my nose and if I did anything nose-wise the water rushed in.
It was tiring, too. But I'm still alive.
All right, not quite. I am just breathing wrong if I want to swim.
Mom is off the hook for this one as I guess I can blame evolution for making breathe like a land animal.
I am not quite sure how to breathe yet, but as my swimming teacher bluntly put it: Yeah, it is something you learn or you take in a lot of water.
I had just admitted to the teacher that while I was being pulled a length of the pool in five-second bursts on my stomach, there was a lot of water in my nose.
It was an interesting experience. I held someone's forearms. When I was ready, I took a breath and put my face in the water. She walked backward for five seconds. I let her pull me off my legs and when they were horizontal in the water, I tried to kick.
I survived. I did take in a lot of water. It sort of rested in my nose and if I did anything nose-wise the water rushed in.
It was tiring, too. But I'm still alive.
Wednesday, July 7, 2010
We kid cuz we love
Mom told me recently about some problems the daughter of a family friend was having.
The gal dropped her kids off at her nearby sister's house, then went home and had a seizure of some sort that affected her brain somewhat. She called the sister and told her she could not find her kids.
Now, I have no kids (that I know of, haha). But I tense up when I am outside reading and look up and can't find Claren right away. I can only imagine that losing your kids must be the absolute worst thing that could happen to a parent.
The sister must have been really spooked, too, but she got her sister to the hospital. Turns out she has epilepsy of some kind and she is on medicine to keep it from happening again. All in all, a good outcome and I am sending lots of good thoughts her way.
My question to Mom after the story: How long before her siblings start making fun of the near-tragedy?
I'm not saying something really mean-spirited, but maybe asking where her kids are when they are all in plain sight. Perhaps you mock the sister for hiding the kids.
Now, I can hear people from my un-air-conditioned spot on the family room couch: "Jeez, Matt." "Be nice." "Jerk."
But I have been conditioned to make fun of the people I love, no matter what, usually with a self-deprecating angle. Maybe it is only to their spouses or parents, but it's important.
Obviously, I use jokes to lighten a disease or a tragedy, usually only if it turns out pretty OK or not as bad as it could have been. Also, I have to make fun of my people because if I treat them with kid gloves, I tell myself, then they will get worried they are dying or something. Third, one of the ways I relate to people is with humor, and if I am solemn I lose that. Finally, maybe it makes them laugh and helps them deal with the crap.
Lest you still think that I am a jerk, remember how I said I was conditioned to use humor, let me tell you some of the conditioning:
The gal dropped her kids off at her nearby sister's house, then went home and had a seizure of some sort that affected her brain somewhat. She called the sister and told her she could not find her kids.
Now, I have no kids (that I know of, haha). But I tense up when I am outside reading and look up and can't find Claren right away. I can only imagine that losing your kids must be the absolute worst thing that could happen to a parent.
The sister must have been really spooked, too, but she got her sister to the hospital. Turns out she has epilepsy of some kind and she is on medicine to keep it from happening again. All in all, a good outcome and I am sending lots of good thoughts her way.
My question to Mom after the story: How long before her siblings start making fun of the near-tragedy?
I'm not saying something really mean-spirited, but maybe asking where her kids are when they are all in plain sight. Perhaps you mock the sister for hiding the kids.
Now, I can hear people from my un-air-conditioned spot on the family room couch: "Jeez, Matt." "Be nice." "Jerk."
But I have been conditioned to make fun of the people I love, no matter what, usually with a self-deprecating angle. Maybe it is only to their spouses or parents, but it's important.
Obviously, I use jokes to lighten a disease or a tragedy, usually only if it turns out pretty OK or not as bad as it could have been. Also, I have to make fun of my people because if I treat them with kid gloves, I tell myself, then they will get worried they are dying or something. Third, one of the ways I relate to people is with humor, and if I am solemn I lose that. Finally, maybe it makes them laugh and helps them deal with the crap.
Lest you still think that I am a jerk, remember how I said I was conditioned to use humor, let me tell you some of the conditioning:
- I flipped a friend's car at high speed on Route 29 on Election Day in my second year of college. Still don't know why. Panic, I guess. We were all OK, though, despite the car rolling into the median and landing on its roof. I remember sitting right about where I am now on the family room couch at that Christmas (I think) when my dear brother-in-law walked in from the living room and said: "So [his wife/my sister] says I can't make fun of your car accident." That was it.
- I have mentioned how another brother-in-law calls me “Crash.”
- My three sisters refer to me as the “little crippled boy,” whenever I get too self-pitying and maudlin. I am pretty sure one of my brothers and my third brother-in-law have used this sobriquet.
- Even Mom has gotten into the act. When those idiots were driving the area shooting people, I told Mom I was going for a walk with Claren. I was pretty depressed at the time, and half-jokingly said, If they kill me at least it will solve my problems. Mom replied, with your luck, they'd probably just wing you and that would make things worse.
Thursday, May 13, 2010
Are you sure you want to read this?
A friend from work recently accused me of running “a secret blog." She was joking (I assume). It was a conversation via IM so I guess she could have been serious.
I told her that I need a place to curse and act out, but the blog isn't really secret. I would not mind if everyone read it. It would give me a bully pulpit.
I am not real sure how to bring it up, for one thing. But to be honest, I can't imagine that my co-workers all want to read about the crap that goes into having Friedreich's ataxia.
Take this week, for instance: At least 35% of the times that I have gone to a men's room at work, the wheelchair stall has been either occupied by a non-wheelchair user or dirty. The dirty in question include bodily fluids and newspapers covering the floor and hanging on the goddamn grab bars that I need to grab to keep from falling.
I see the folks I work with, so I know they are intelligent adults, but in the bathroom some apparently revert to childhood.
As least I am getting better at reacting. I went into the men's room today, saw six empty stalls that I cannot use and one wheelchair stall that was occupied by a non-wheelchair user. I turned around and said to Claren as we were leaving “Un-fucking-believable.” I am sure the abuser did not hear me, but one of these days, he will.
Better yet, take last night, as another for instance: I woke up about 2, had to go to the bathroom and did not get everything lined up with the urinal. I tried several alternatives: pulling up the covers, putting on sleeping pants, going commando in said sleeping pants, but in the end I had to take a shower. I figured I better alert Mom and Dad or they'd hear the water and be freaked out.
I got into the shower OK, wrestled with the nozzle, lost, shot myself in the face twice, then washed and reached for my towel. It wasn't there, and towels are not a convinient thing to reach, so I got out of the shower soaking and managed to grab a few washcloths, which dried the brunt of me, and then I got a towel.
I finally managed not to leap out of my chair when I heard Mom outside the door. She had gotten up to clean my bed so I could go back to sleep, which I did.
See! I mean, sure I have plenty of hilarious escapades and humorous asides, but I am not sure I want to read about the crap that goes into having Friedreich's ataxia.
I have to write about it, though.
All through the shit of last night, I didn't despair or cry or even want to. I just thought: OK, here is what I will write ...
Why write something public (even if it is sort of secret)? Maybe it'll help someone. Maybe they'll see that their experiences with FA aren't unique. Maybe Mrs. Gates will read it and say, "Oh, that Matt, he deserves millions of dollars. Write him a check, Bill dear."
In the end, that doesn't matter. I write because that is what I do. It keeps me sane and alive, and hopefully not too bitter, in the face off a really awful disease.
I told her that I need a place to curse and act out, but the blog isn't really secret. I would not mind if everyone read it. It would give me a bully pulpit.
I am not real sure how to bring it up, for one thing. But to be honest, I can't imagine that my co-workers all want to read about the crap that goes into having Friedreich's ataxia.
Take this week, for instance: At least 35% of the times that I have gone to a men's room at work, the wheelchair stall has been either occupied by a non-wheelchair user or dirty. The dirty in question include bodily fluids and newspapers covering the floor and hanging on the goddamn grab bars that I need to grab to keep from falling.
I see the folks I work with, so I know they are intelligent adults, but in the bathroom some apparently revert to childhood.
As least I am getting better at reacting. I went into the men's room today, saw six empty stalls that I cannot use and one wheelchair stall that was occupied by a non-wheelchair user. I turned around and said to Claren as we were leaving “Un-fucking-believable.” I am sure the abuser did not hear me, but one of these days, he will.
Better yet, take last night, as another for instance: I woke up about 2, had to go to the bathroom and did not get everything lined up with the urinal. I tried several alternatives: pulling up the covers, putting on sleeping pants, going commando in said sleeping pants, but in the end I had to take a shower. I figured I better alert Mom and Dad or they'd hear the water and be freaked out.
I got into the shower OK, wrestled with the nozzle, lost, shot myself in the face twice, then washed and reached for my towel. It wasn't there, and towels are not a convinient thing to reach, so I got out of the shower soaking and managed to grab a few washcloths, which dried the brunt of me, and then I got a towel.
I finally managed not to leap out of my chair when I heard Mom outside the door. She had gotten up to clean my bed so I could go back to sleep, which I did.
See! I mean, sure I have plenty of hilarious escapades and humorous asides, but I am not sure I want to read about the crap that goes into having Friedreich's ataxia.
I have to write about it, though.
All through the shit of last night, I didn't despair or cry or even want to. I just thought: OK, here is what I will write ...
Why write something public (even if it is sort of secret)? Maybe it'll help someone. Maybe they'll see that their experiences with FA aren't unique. Maybe Mrs. Gates will read it and say, "Oh, that Matt, he deserves millions of dollars. Write him a check, Bill dear."
In the end, that doesn't matter. I write because that is what I do. It keeps me sane and alive, and hopefully not too bitter, in the face off a really awful disease.
Sunday, May 9, 2010
Happy Mothers' Day
I had intended to write about how I tend to bring out the mother in women, whether it is my niece being "as proud as a mother hen" at my talk to her class or friends fixing my coat collar at work.
I realize that it might just be that I attribute nice things done to me by a woman as maternal, which is odd.
But I never got around to writing.
It is, however, nothing new really. Here is something I wrote in 1995, and it is quite similar although I suggested then that it was a sisterly, not maternal, instinct.
The most troubling aspect of this '95 essay is that I am now the older man I was then competing against and the older set I mention is within my sight. Add 15 years to the numbers below. Oh, and I got the cute puppy – no help.
Happy Mothers' Day to all my moms.
I read a story today that more and more women are beginning to date younger men, and it gave a list of reasons. Evening up life expectancies, sexual peaks, etc. Then there major reason: Younger men are more sensitive than older guys. In other words, I should be the man.
The jokes about becoming a gigolo may turn to fact. I am more sensitive than most guys my age, so I must be doubly more sensitive than older guys, so ...
But I’m not turning anyone away at the door, and that doesn’t mean I am dating handfuls of women. No one is coming to my door to be turned away.
I do have a different effect on women depending on their age. The older set, say 50 or so and up, tends to see me as a grandson or son. Generally, these women will point things out for me and will appreciate me because I am polite and respectful. This is great. I like to earn the appreciation of my elders.
The other effect is more troubling. Women, 20-35, tend to view me as their little brother. My age is insignificant. I need looking after to make sure everything goes OK. If I could find one young lady who thinks of me not as a little brother but as a tantalizing tower of testosterone or at least as a guy, then the phenomenon would be perfect. My significant other would not have to worry A) about me getting into trouble because all my big sisters would be looking out for me, and B) about having an affair because I’m not into incest.
But is this a fault of my perception? Has having two older sisters and one younger one who like to make sure I’m safe spoiled my outlook on women? Do some women look at me -- their eyes hot with a seething, swirling passion -- and have their sensuous glance met with the look of a little brother? Then all of a sudden, these women think, “My god, what am I doing? I am make eyes at my little brother. What kind of sicko am I?”
So not only do I lose a potential significant other but I drive them into therapy for what they decide are impure thoughts. This of course would drive the therapist insane because there would be no impurity. But if it was a female doctor, my “sister” could bring me in, and after I met the therapist, she would look at her patient and say, “You were thinking of him that way. How could you? He’s so adorable. Matt, do you want some milk and cookies?”
A roommate and I once talked about borrowing my then-3-year-old nephew and a puppy and walking with them around college. We were certain babes would flock to these cute things and then turn to us as the protectors of the cute things.
Maybe I should mention my adorability to my single friends. I’m cheaper than a puppy.
I realize that it might just be that I attribute nice things done to me by a woman as maternal, which is odd.
But I never got around to writing.
It is, however, nothing new really. Here is something I wrote in 1995, and it is quite similar although I suggested then that it was a sisterly, not maternal, instinct.
The most troubling aspect of this '95 essay is that I am now the older man I was then competing against and the older set I mention is within my sight. Add 15 years to the numbers below. Oh, and I got the cute puppy – no help.
Happy Mothers' Day to all my moms.
I read a story today that more and more women are beginning to date younger men, and it gave a list of reasons. Evening up life expectancies, sexual peaks, etc. Then there major reason: Younger men are more sensitive than older guys. In other words, I should be the man.
The jokes about becoming a gigolo may turn to fact. I am more sensitive than most guys my age, so I must be doubly more sensitive than older guys, so ...
But I’m not turning anyone away at the door, and that doesn’t mean I am dating handfuls of women. No one is coming to my door to be turned away.
I do have a different effect on women depending on their age. The older set, say 50 or so and up, tends to see me as a grandson or son. Generally, these women will point things out for me and will appreciate me because I am polite and respectful. This is great. I like to earn the appreciation of my elders.
The other effect is more troubling. Women, 20-35, tend to view me as their little brother. My age is insignificant. I need looking after to make sure everything goes OK. If I could find one young lady who thinks of me not as a little brother but as a tantalizing tower of testosterone or at least as a guy, then the phenomenon would be perfect. My significant other would not have to worry A) about me getting into trouble because all my big sisters would be looking out for me, and B) about having an affair because I’m not into incest.
But is this a fault of my perception? Has having two older sisters and one younger one who like to make sure I’m safe spoiled my outlook on women? Do some women look at me -- their eyes hot with a seething, swirling passion -- and have their sensuous glance met with the look of a little brother? Then all of a sudden, these women think, “My god, what am I doing? I am make eyes at my little brother. What kind of sicko am I?”
So not only do I lose a potential significant other but I drive them into therapy for what they decide are impure thoughts. This of course would drive the therapist insane because there would be no impurity. But if it was a female doctor, my “sister” could bring me in, and after I met the therapist, she would look at her patient and say, “You were thinking of him that way. How could you? He’s so adorable. Matt, do you want some milk and cookies?”
A roommate and I once talked about borrowing my then-3-year-old nephew and a puppy and walking with them around college. We were certain babes would flock to these cute things and then turn to us as the protectors of the cute things.
Maybe I should mention my adorability to my single friends. I’m cheaper than a puppy.
Thursday, April 29, 2010
Do you feel lucky, Matt? Hell no!
When I was younger, I used to read Gram's copy of the Smithsonian Book of Comic-Book Comics
. It was full of awesome early comics. I am not sure where it is now – it was not in her house when she died -- but I was thinking about it today.
One of the stories teamed up Plastic Man with Woozy Winks, who I remember as the luckiest man alive. I have just learned, however, that was temporary. He was usually a bumbling oaf providing comic relief, to which I say: “Plastic Man needs comic relief? He is a jokey character.”
I was thinking of Woozy and wondering what it is like to be lucky.
Today, I went to LensCrafters to pick up some sunglasses that I had ordered weeks ago. I was a little nervous because I was planning to ask for a discount because the glasses were late.
We went even though my lower back felt ready to explode because I sneezed oddly or strained it in any of a half-dozen ways.
The best handicapped parking spots were taken by wussy sedans. Grrr. But I was on Cloud 9 in the store because I asked for a discount and he gave me one. It was pretty modest, but I did it. Yeah, me.
Then I went out to the car with Mom and showed her my glasses ... or tried to. A lens popped out right there.
I was running late to work so Mom said she'd drop me off, then go back. Of course, the check-engine light in the van came on.
It turned out OK. Mom defied the check-engine light, went back and eventually got the lens fixed. And before anyone says anything, I know I am lucky to have Mom.
But I just wonder what it would feel like to be Woozy and not have these kind of things happen.
I guess Woozy wouldn't need glasses, though.
. It was full of awesome early comics. I am not sure where it is now – it was not in her house when she died -- but I was thinking about it today.One of the stories teamed up Plastic Man with Woozy Winks, who I remember as the luckiest man alive. I have just learned, however, that was temporary. He was usually a bumbling oaf providing comic relief, to which I say: “Plastic Man needs comic relief? He is a jokey character.”
I was thinking of Woozy and wondering what it is like to be lucky.
Today, I went to LensCrafters to pick up some sunglasses that I had ordered weeks ago. I was a little nervous because I was planning to ask for a discount because the glasses were late.
We went even though my lower back felt ready to explode because I sneezed oddly or strained it in any of a half-dozen ways.
The best handicapped parking spots were taken by wussy sedans. Grrr. But I was on Cloud 9 in the store because I asked for a discount and he gave me one. It was pretty modest, but I did it. Yeah, me.
Then I went out to the car with Mom and showed her my glasses ... or tried to. A lens popped out right there.
I was running late to work so Mom said she'd drop me off, then go back. Of course, the check-engine light in the van came on.
It turned out OK. Mom defied the check-engine light, went back and eventually got the lens fixed. And before anyone says anything, I know I am lucky to have Mom.
But I just wonder what it would feel like to be Woozy and not have these kind of things happen.
I guess Woozy wouldn't need glasses, though.
Wednesday, April 14, 2010
Red (Bath)rum
Finally, Verizon came and fixed the Internet. The modem had gone bad and needed replacing. I say finally because they were due Tuesday morning, and Mom stayed by the phone all morning because if they call and you don't answer, they don't come. When they did not come anyway, Mom called. The vaunted Verizon support team apparently told Mom that they called and got no answer. But Mom told them not to give her that and that she was with the phone all morning. They replied: Oh, we'll come tomorrow.
In other news:
It never ceases to amaze me how much blood my toes hold. For appendages with poor circulation -- at best -- I would think they would be nearly bone dry. Once again, of course, I'd be wrong.
I scraped the top of one of my toes on the door into the bathroom this morning. I pulled the door open, and it swept over my foot until it hit the toe. I really hate doors. Greg Brady was so on to something.
I shrugged it off because I am tough, shaved and went to the bathroom. Only then did I notice the color change to the floor: red.
It wasn't as much as the gusher of blood in The Shining. But it was more than I could clean up.
Mom got it up quickly, although she did say she would have to empty the trash to get rid of the blood-soaked towel before the cleaners come.
P.S. Claren the wonder dog and I got a shout-out in a friend's blog.
In other news:
It never ceases to amaze me how much blood my toes hold. For appendages with poor circulation -- at best -- I would think they would be nearly bone dry. Once again, of course, I'd be wrong.
I scraped the top of one of my toes on the door into the bathroom this morning. I pulled the door open, and it swept over my foot until it hit the toe. I really hate doors. Greg Brady was so on to something.
I shrugged it off because I am tough, shaved and went to the bathroom. Only then did I notice the color change to the floor: red.
It wasn't as much as the gusher of blood in The Shining. But it was more than I could clean up.
Mom got it up quickly, although she did say she would have to empty the trash to get rid of the blood-soaked towel before the cleaners come.
P.S. Claren the wonder dog and I got a shout-out in a friend's blog.
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